Palliative Care in Prisons Project

The Palliative Care in Prisons Project aims to improve access to best evidence-based, culturally-safe, high-quality palliative and end-of-life care for people in prisons, through the collaborative co-design of a new National Framework for the Provision of Palliative Care in Australian Prisons.

Logo for palliative care in prisons project

Strengthening access to best evidence-based care for people with palliative care needs in Australian prisons: a national co-design and capacity building project (4-E1QGPSQ)

Project description

The Palliative Care in Prisons Project is led by Professor Jane Phillips and is comprised of five distinct phases.

This five-year co-design project (July 2020-June 2025) aims to understand current palliative care provision in Australian prisons and to identify the barriers to and facilitators of evidence-based palliative and end-of-life care.

The Project Consortia will co-design a National Framework for the Provision of Palliative Care in Australian Prisons (National Framework) with Project Partners and key stakeholders using a collaborative and solution-oriented approach.

Opportunities to Contribute

The Palliative Care in Prisons project team is keen to hear from people who have had a family member in an Australian prison with palliative care needs. Please see the links below for more information about contributing to the project.

Interviews with Aboriginal and/or Torres Strait Islander Elders, leaders and caregivers in NSW

We are seeking to interview Aboriginal and Torres Strait Islander people from across NSW about experiences they have had supporting family or friends who may be sick in prison or who passed away in prison. Read our information for Aboriginal and Torres Strait Islander Elders, leaders and caregivers (PDF, 0.2MB) to learn more or get involved.

Interviews with family members of people in prison who have had palliative care needs

We are seeking to interview people who have had a family member in prison with advanced life-limiting disease, or palliative and end-of-life care needs. Read our information for family members (PDF, 0.2MB) to learn more or get involved.

Queensland Palliative Care Capacity-Building Workshop

The Queensland Palliative Care Capacity-Building Workshop brought together Queensland stakeholders from Justice Health and Correctional Services to develop strategies for enhancing palliative care in prisons. The report highlights practical recommendations for improving care through targeted education, collaboration, and culturally sensitive practices, aiming to better support the palliative needs of people in prisons in Queensland. 

Read the workshop report.

Co-design workshop

A co-design workshop was held on 12 September 2023 in Sydney, NSW. Two nominated senior justice health and correctional services personnel from each jurisdiction were invited to participate.

The selection of co-design was made as it was considered the most effective approach to determine priorities, identify barriers and facilitators, and gain a deep understanding of stakeholders' experiences in receiving and delivering services [6].

This co-design approach allows for collaborative prioritisation of improvements, incorporating a systems and perspectives approach with careful attention to governance and process, providing a mechanism for redefining improvements into actionable strategies prioritised for implementation. 

The resulting co-design workshop recommendations highlight an awareness of the evolving demographics in Australian prisons, emphasising the necessity to address healthcare for an ageing population with chronic illnesses. As the number of older inmates increases, the demand for palliative care grows.

The proposed actions focus on preparing the sector for this rise:

  • Implementing multi-mode interactive education for palliative care excellence
  • Building connections with local palliative care teams
  • Encouraging collaborations between correctional and justice health on local and national levels
  • Conducting evaluations for effectiveness.

Moving forward, partnering with jurisdictions to put their preferred palliative care capacity-building initiatives into operation is crucial. In 2024, the National Palliative Care in Prisons Project aims to advance this agenda by exploring various capacity-building opportunities. These include:

  • developing online spaced learning content
  • offering clinical placements through PEPA/IPEPA
  • establishing interdisciplinary palliative care champions
  • promoting collaborative service delivery
  • creating cultural pathways
  • fostering communities of practice
  • implementing ECHO, and
  • initiating quality improvement projects. 

Together, these efforts present an opportunity to enhance palliative care provision in Australian prisons and improve overall care outcomes.

Thirteen recommendations emerged from the co-design workshop. These are documented in the National Palliative Care Capacity-building Co-Design Workshop Justice Health and Correctional Services Report. 

Project Newsletters

Project phases

Five connected circles show phases of study as Phase 1 Start-up, phase 2 gap analysis, phase 3 co-design framework, phase 5 sustainability. The circles are shades of green and blue and each has an illustration to match the phases.
Project phases in detail.

Phase 1: Start-up

  • Establish the National Consortia Project Advisory Group
  • Establish Working Groups
  • Engage Aboriginal and Torres Strait Islander communities
  • Secure national jurisdictional ethical approvals

Phase 2: Gap Analysis

  • Rapid review of peer-reviewed literature
  • Palliative Care Organisational Self-Assessment telephone survey
  • Retrospective medical record review
  • Stakeholder interviews to identify barriers and facilitators to care provision
  • Economic evaluation

Phase 3: Co-design National Framework

  • Define and agree upon priorities for palliative care in prisons
  • Co-design the elements for inclusion in the National Framework for Provision of Palliative Care in Australian Prisons

Phase 4: Implementation

  • Co-design the plan for implementation of the National Framework for Provision of Palliative Care in Australian Prisons

Phase 5: Sustainability

  • Disseminate the National Framework for Provision of Palliative Care in Australian Prisons and the tools that have been developed
  • Review the sustainability of the National Framework for Provision of Palliative Care in Australian Prisons

Project Groups

Palliative Care Co-design Working Group logo

 

National Consortia Project Advisory Group

Aboriginal and Torres Strait Islander Community Engagement Strategy Working Group logo

 

Aboriginal and Torres Strait Islander Community Engagement Strategy Working Group

 National Aboriginal and Torres Strait Islander Leadership Group
Correctional/ Justice Health Services Working Group logo

 

Correctional / Justice Health Services Working Group

Palliative Care Co-design Working Group logo

 

Palliative Care Co-design Working Group (to be developed)

Background to the project

Prisons project summary image, see caption below for description

Summary image: National Palliative Care in Prisons (PiP) Project: a National Co-design and Capacity-Building Project. The PiP Project brings together a partnership of 20+ institutions to improve access to best evidence-based palliative and end of life care for people in prison. The prison population is ageing, and has a high burden of chronic disease. There is no current framework for delivering palliative care to people in Australia’s 115 prisons. Development of a National Framework for Provision of Palliative Care in Australian Prisons is a national priority. The project will occur in five phases: Set-up, Gap Analysis, Co-Design, Implementation and Sustainability.

Similar to international trends, Australian Correctional/Justice Health Services increasingly need to provide palliative and end-of-life care to people in prisons. Over the last decade (2009-19), the proportion of older Australians in prisons (aged over 45 years) grew by more than 78%. {1, 2} Older people now account for nearly half (47%) of the prison population. {3} Older people in prison are more likely to suffer from complex comorbidities associated with their lifestyle risk behaviours. {3}

Any discussion about palliative care in prisons must include Aboriginal and Torres Strait Islander leadership and perspectives, respecting the right to culturally safe care. Aboriginal and Torres Strait Islander people have long been over-represented in Australian prisons {4} and 2018-19 data shows they are disproportionately represented in deaths in custody. {5} Impacts since colonisation including systemic bias, racism, poverty and multiple compounding traumas continue to produce risks for higher incarceration rates of Aboriginal and Torres Strait Islander people and worse health outcomes. {6,7} In 2018, nearly a quarter (23%) of Aboriginal or Torres Strait Islander prison entrants were diagnosed with a current chronic condition. {8}

There is currently no standardised national model of palliative care for Australian prisons, and limited information about the capacity of Correctional/Justice Health Services to provide palliative care. 

 The project team have engaged Correctional/Justice Health Services from all Australian States and Territories, in addition to clinicians and experts to form a National Consortia to guide the project. The Consortia will guide the Gap Analysis of palliative care provision in Australian prisons, and co-design of a new National Framework for Provision of Palliative Care in Australian Prisons.

 References:   
1. Grant A. Elderly inmates: issues for Australia. Trends and Issues in Crime and Criminal Justice, Australian Institute of Criminology, 1999 (115):1.   
2. Australian Bureau of Statistics. Persons in Corrective Services. Sydney, NSW; 2019.   
3. Australian Institute of Health and Welfare. Health and ageing of Australia’s prisoners 2018.  Cat. no. PHE 269. Canberra: AIHW; 2020.   
4. Australia Bureau of Statistics. Corrective Services Australia, March Quarter 2021, https://www.abs.gov.au/statistics/people/crime-and-justice/corrective-services-australia/mar-quarter-2021 (Accessed 10 August 2021).   
5. Doherty L and Bricknell S 2020. Deaths in custody in Australia 2017-18. Statistical Report no. 21. Canberra: Australian Institute of Criminology, 2020. https://doi.org/10.52922/sr04343   
6. Pettit S et al. Holistic primary health care for Aboriginal and Torres Strait Islander prisoners: exploring the role of Aboriginal Community Controlled Health Organisations. Australian and New Zealand Journal of Public Health. 2019; 43(6):538-43.   
7. Human Rights and Equal Opportunity Commission. Bringing them home: National Inquiry into the separation of Aboriginal and Torres Strait Islander children from their families. Sydney; 1997.   
8. Australian Institute of Health and Welfare. The health of Australia’s prisoners 2018. Government. Canberra, ACT; 2019. Report No.: Cat. no. PHE 246.”

Aboriginal and Torres Strait Islander Engagement Strategy

An essential component of the PiP Project is the embedded Aboriginal and Torres Strait Islander Community Engagement Strategy, ‘Wambinya’, supported by the Aboriginal and Torres Strait Islander Community Engagement Working Group and led by Professor Megan Williams (July 2020-June 2023) and Monique Hooper from July 2023.

This Working Group has also guided the establishment of the National Aboriginal and Torres Strait Islander Leadership Group to represent and advocate for Aboriginal and Torres Strait Islander perspectives and knowledges. This input is critical to understanding these data and the dissemination of findings, and the co-design and development of the National Framework.

The Leadership Group includes Aboriginal and Torres Strait Islander people from across Australia with experience in community and prison health service delivery, palliative care, cultural safety, research, and policy development. 

Project funding

The $1.2M National Palliative Care in Prisons Project (4-E1QGPSQ) is funded by the Australian Government Department of Health: Public Health and Chronic Disease Grant Program, as part of the National Palliative Care Projects initiative.

Project Lead and Project Co-Investigators

Project Lead

Professor Jane Phillips   
Head School of Nursing, Queensland University of Technology and Professor Emerita, University of Technology Sydney   
jane.phillips@qut.edu.au

Co-Investigators:

  • Associate Professor Penelope Abbott
  • Professor Meera Agar
  • Dr Michael Chapman
  • Professor Katherine Clark
  • Professor David Currow
  • Associate Professor Michelle DiGiacomo
  • Associate Professor Nicole Heneka
  • Professor Louise Hickman
  • Dr Jocelyn Jones
  • Dr Irina Kinchin
  • Professor Nick Lintzeris
  • Professor Liz Lobb
  • Dr Tim Luckett
  • Dr Stacey Panozzo
  • Professor Deborah Parker
  • Professor Jennifer Philip
  • Dr Christine Sanderson
  • Ms Isabelle Schaefer
  • Professor John Scott
  • Robert Shaw
  • Professor Megan Williams

Project team:

July 2023 - June 2025

  • Monique Hooper, Project Manager
  • Dr Stephanie Edwards, Project Manager

June 2020 - June 2023

  • Kim Offner, Project Manager
  • Isabelle Schaefer, Project Officer
  • Sally Fielding, Project Officer

Project Partners

Palliative Care in Prisons Project Partners map

Map of Australia with PiP Project Partners by state: ACT: (ACT Justice Health, Canberra Health Service); NSW: (Calvary Health Care Kogarah (2020-2023), Justice Health and Forensic Mental Health Network, South Eastern Sydney Local Health District, Sydney Partnership for Health, Education, Research and Enterprise (SPHERE), Western Sydney University, Corrective Services NSW); NT: (NT Department of Correctional Services, NT Department of Health); QLD: (Queensland Health, Office for Prisoner Health and Wellbeing, Queensland University of Technology (QUT), QUT- Program of Experience in the Palliative Approach (PEPA) Queensland Corrective Services); SA: (SA Prison Health Service, Department for Correctional Services); TAS: (Tasmanian Health Services, Tasmanian Prison Service); VIC: (Correct Care Australasia (2020-2023), Justice Health Victoria, St Vincent’s Hospital Melbourne, University of Melbourne, Palliative Medicine Research Group, Corrections Victoria); WA: (WA Corrective Health Services, Department of Justice, Curtin University); National Partner: (Palliative Care Australia)

 

 

Contact

pip.project@qut.edu.au

Acknowledgement of Country

UTS acknowledges the Gadigal people of the Eora Nation, the Boorooberongal people of the Dharug Nation, the Bidiagal people and the Gamaygal people, upon whose ancestral lands our university stands. We would also like to pay respect to the Elders both past and present, acknowledging them as the traditional custodians of knowledge for these lands.